RARE: For seven years Becca Battye's illness has remained a mystery.
RARE: For seven years Becca Battye's illness has remained a mystery.

Family desperate for medical help caught up in flight drama

A TRIP that could finally give a Gladstone family the answers they need to improve their daughter's health started with an unexpected $5000 hurdle.

For seven years, Gerard Battye and Jenny Morris tried to figure out what caused their daughter Becca's seizures, frequent dislocations and bone breaks.

After six months consulting with American clinic the Pots and Dysautonomia Treatment Center, the pieces point to Elhers Danlos Syndrome, a rare and untreatable genetic condition.

In their most promising moment yet, the family was guaranteed a spot in a five-day trial this week at the Texas clinic, to confirm a diagnosis and provide a personalised program and regime to help cope with it.

But Becca, her parents and brother Sam, 17, were faced with another struggle when their Qantaslink flight from Gladstone to Brisbane on Saturday was delayed by almost three hours.

Jenny said it was believed to be a result of wild weather in Brisbane on Friday night and Saturday morning.

 

Sam Battye, 17, Jenny Morris, Gerard Battye and Becca Battye, 13.
Sam Battye, 17, Jenny Morris, Gerard Battye and Becca Battye, 13.

Because they booked the Brisbane to Gladstone flights separately to the American leg of their trip, they had to spend $5000 on new flights.

Wendy Morris, Jenny's sister, said it was an unfair hurdle for the family which had been through so much.

"Hopefully their travel insurance will cover the $5000 it's cost to reschedule the international flight, cost of accommodation in Brisbane tonight and they can't fly out until tomorrow now and the costs to get them to and from that accommodation from the airport," Wendy said.

"For Becca to have the best long term prognosis (Gerard and Jenny) wanted to see people who understand this, that's why they're seeing this clinic, they specialise in it."

The Dallas clinic, which specialises in Elhers Danlos Syndrome, was the first to suggest Becca suffers from the genetic condition, after years of visits to numerous specialists in Australia.

"Becca's health journey, since she was about three years old, has been puzzling, tiring and at times heartbreaking," Jenny, a Toolooa State High School guidance counsellor said.

"After years of investigating and confused hypotheses, all the puzzle pieces now suggest that she has the relatively rare genetic disorder."

It means Becca does not produce enough collagen, a protein, for her body which causes soft skin, fragile joints and weak ligaments.

Despite being unaware for years what their daugther's condition is, they have remained "incredibly resilient" and hopeful in their search for answers.

Wendy said the family had everything from casts to crutches and moonboots at their home because of Becca's frequent injuries.

"They're all very resilient, the nature of the family is they're trying to make the best of this situation, but there's no doubt there's things that she just cannot do," Wendy said.

"Soccer was the sport she loved but it's just too dangerous."

Qantas was contacted for comment.

Elhers Danlos Syndrome

People with EDS have a defect in their connective tissue that provides support to the skin, muscles and ligaments.

The fragile skin and unstable joints are a result of faulty collagen, which is a type of protein that adds strength and elasticity to connective tissue.

Symptoms range from dislcations to stretchy skin, easy bruising and muscle spasms.



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